Face the music.

What I Wish I Had Five Months Ago.

It’s time I laid out some information here… not because it isn’t easily found on the web otherwise, but because sometimes it is easy to see and read it all in one place. Thusly (I love that word, and I can’t help it), I am going to use this post to answer, as completely as I can, the question, “What is autism?” I’m not one to dumb things down so this might be boring and dry, but this is going to be a one stop shop of info, kind of with me-five-months-ago in mind. I hope this helps a Mommy out there needing this information. I hope this makes sense, and I hope it does the information justice.

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Let’s start with a portion of a summary I found on Psychology Today’s website:

Autism is a complex developmental disorder that affects the brain’s normal development of social and communication skills. Common features of autism include impaired social interactions, impaired verbal and nonverbal communication, problems processing information from the senses, and restricted and repetitive patterns of behavior…

Children with autism do not follow the typical patterns of child development. In some, signs of future problems may be apparent from birth. Other children develop typically at first, but between the ages of 18 and 36 months, their development stagnates. Parents may notice that they begin to reject social contact, act strangely, and even lose language and social skills that they have already acquired. In other cases, there is a plateau or leveling of progress, and the difference between the child with autism and other children the same age becomes more noticeable.

So that’s some basic info. And what does it mean? It means that autism, and when I say that I am really referring to a set of disorders that fall under the DSM IV (the standard book of diagnostic criteria for psychological and neurological disorders) current category of “pervasive development disorder” including Autism, Pervasive Development Disorder not-otherwise-specified (PDD-NOS), Asperger Syndrome, Rett Syndrome and Childhood Disintegrative Disorder.

Now, psychologists are working on the DSM V, and there are revisions proposed to the current criteria that will put all of these subsets under one label– Autism Spectrum Disorder. My son was labeled the “new” diagnosis of ASD, though he fits into the current subset of PDD-NOS.

Autism/ Autistic Disorder is what is commonly known as “Classic” or Kanner’s Autism– it is what most people think of when they have a stereotypical picture of autism in their head, but that does not mean that autistic disorder is always the most severe form of autism. From what I understand, reliable diagnosis can be made as young as twelve months and usually by two years of age.

PDD-NOS is what most people consider the “catch all” label for people who don’t fit into the other categories of autism. PDD-NOS captures people who meet all the criteria for autistic disorder but are not severe enough OR who meet all the criteria but have great strengths (technically I think my son fits in here) OR they do not meet enough criteria to fit the classic description/have an arrangement of symptoms that keeps them from meeting the autistic criteria even though the person could very well be more severe than someone who meets all the criteria for autism. It’s sort of confusing, but once you look at the diagnosis criteria, it starts to make sense. Let me make this clear though– PDD-NOS is a form of autism not nearly the same for any person. From what I understand, reliable diagnosis as young as twelve months and usually by two years of age. ((I think I like the DSM V label of ASD more than PDD-NOS mainly because it reflects the great variance in arrangements and severity in its name, whereas PDD-NOS is ambiguous and assumed less severe (it’s a toss of a coin as to whether that is so). Besides, autism is said to be a spectrum disorder, but it doesn’t yet have the word spectrum in its name. I think it is just more clear to put it there. And this is just my very humble and from-where-we-are current opinion so don’t take me too seriously.))

Asperger Syndrome is often considered a less severe form of autism that generally gets diagnosed past the age of five. Known almost as “geek” syndrome because people with AS are generally very high functioning and often very intelligent, it has less diagnosis criteria than the two former labels, most notably different in that AS people do not have speech delays (depending on our son’s progression, our son could arguably wind up with this as a better description). I’ll write more about AS later for sure, but there’s some good info on it here and here and here. I will specifically link to the Asperger DSM IV criteria here. I will also mention again that Asperger Syndrome can be sneaky in girls. Read here and here for more information.

I’m not getting into Rett’s or CDDright now, but visit the links for more info.

So now let’s look at the DSM IV criteria. Notice how it gets sort of complicated with the certain number of symptoms in certain categories and then a certain number ‘at least’ total… this is how PDD-NOS is created– there are kids that have six total symptoms, but mostly in one category or less than six symptoms, but the symptoms affecting the child are very severe and in more than one category. So just imagine how a child who has a very social nature can then be terribly disrupted by being severely affected by the repetitive behavior category. Arguably that severity there will affect the other categories, but still, there are children and people who are so marked by one of these categories that they can be more severely affected than someone who meets criteria in the right alignment– like our son, who meets everything where he needs to and yet is still arguably high functioning.

Anyway, I will bold/italicize things our son meets and * things that are not terribly severe based on our child’s current age (if nothing changes there, it becomes more severe… as in, if he does not grow out of it like most toddlers do) or it simply does not seem to be a severe symptom at this time. Please remember our son is not labeled Autistic Disorder because of his strengths AND lack of severity in some areas:

Autistic Disorder A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

(1) qualitative impairment in social interaction, as manifested by at least two of the following:

(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people

B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:

1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D. Symptoms together limit and impair everyday functioning.

Okay, great. So what the hell does any of this mean, right? *Sigh* Here we go… These “categories” of impairments are basically summarizing that a person has deficits in the categories of social, communication, and repetitive behaviors. These deficits must be severe enough to “limit and impair everyday functioning.” And the onset of these symptoms is generally between birth to age three, though Asperger Syndrome is not diagnosed so young– it sort of becomes apparrent in time that AS is there, and with the DSM V, it changes the age range issue. For our son, there was always an issue with eye contact and then with speech development, but then he lost skills– which is not uncommon. The “term” there is regressive autism, but our son has not lost enough and has regained plus more in so many areas that that term is not the best fitting for him. Not that terms always matter. Ach! I am rambling!!

So here’s the breakdown of non-sciencey info.

In the category of social: that even if a person CAN and HAS made eye contact… even if your baby DID make the milestone of i.e. social smiling… if there is an IMPAIRMENT in functioning that sets this person apart, the criteria is met. This impairment can include eye contact or even not bringing objects to people to show or share them (my son does not bring me things and look at me to show them to me. he only brings me three things 1-“dirt” he wants me to throw out, 2-books via shoving them in my hand and not looking at me, 3-cars, which he does not always tell me what to do. sometimes he says “be red car.” other times, he puts the car in my hand and whines while moving my hand to get me to play. obviously, we are working on this with strategies we can talk about later.) It can include a lack of looking up at someone during play (“joint attention”). The person doesn’t have to be antisocial. The person does not have to hate being touched or hugged. However, those can be symptoms.

As for communication, the most obvious is a speech delay in a child that persists and persists. Some children on the spectrum DO make eye contact, but they are nonverbal or limited in verbal functioning. Some people HAVE language, but developed it peculiarly. As for our son, he has language, but he never really babbled or held a cooing conversation. He currently does not really ask for things, though he is sort of starting to make some demands (especially for me to use the vacuum as you read yesterday). The limit in language can be merely pragmatic speech, that is keeping up or initiating a conversation– maybe the person even WANTS a conversation, but can’t understand or ‘do’ social chit chat.

Many people on the spectrum have difficulty with imaginative play. This is one of our son’s great strengths, and so I want to stress here that just because a child is imaginative does not suspend his or her ability to be on the spectrum. In fact, some people on the spectrum have vivid and incredibly overzealous imaginations, so much so that some are famous artists, writers, composers, you-name-it. Again, there is a huge variety in functioning, and some people do not even realize until adulthood that he or she is on the spectrum.

Lastly, repetitive behaviors. Again, what a range! Because this can encompass the sort of obsessions my son has in trucks and vacuums, but it can also account for his head shaking and sitting and opening a cabinet door over and over again or lying on the ground to watch a car’s wheels roll and roll and roll (to my son, ceiling fans are awesome!). It can account for people who have very strict routines that MUST be met, and this can be in any area of life from food (there are kids who will literally eat only out of one specific bowl, or just one specific food) to flipping out because a parent drove on a different road home than normal.

The sensory component is a proposed new one, but it accounts for sensory processing problems that can refer to balance/coordination, difficulty with lights/sounds/tastes/textures/clothes/temperatures, lack of pain/hypersensitive to pain, etc. etc. etc. I’ll go here on a post later because there is much to say!

There are things that ASD people can be very, very good at doing… things like puzzles, music, art, math, logic, computer technology. Some ASD people are hyperlexic and read at a very young age. Most people with ASD, like all people in this world, are amazing and wonderful. Don’t let this disorder get in the way of how you see people with ASD.

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If you are concerned about someone you love, please read more about the RED FLAGS for autism here and here and here.

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What else is there to know?

Sometimes autism is not just there in and of itself. There are often co-morbid issues or sometimes genetic causes. The genetic causes can be Fragile XorAngelman Syndromeor Rett Syndrome. Speak to your doctor if you think your child should have genetic testing.

The co-morbids are many, but ones we are specifcally dealing with are possibleseizure disorderand some severe gastrointestinal issues. Many people have sleep issues. Our son NEVER has been a good napper, and I mean literally he was a three-month-old who almost did not nap. It never really changed. Movement coordination is often an issue, and often dyspraxia/apraxia of speech is diagnosed. And then there is sensory processing disorder, which is sort of being account for in the new DSM within the autism diagnosis, but also is possibly being added as a separate official diagnosis option. Honestly, sometimes I wonder if SPD is really the only thing “going on” with our little boy. Other co-mordids are things such as ADHD, mental retardation, mental illnesses such as bipolar disorder, anxiety disorder, major depression. And more! Wee!

And if you think your child looks like autism, but want to see what is out there, Autism Speaks has a video glossary. Also, I honestly did search on youtube for some things. Obviously remember some people are wacko and put weird things other there, but if you are searching for something specific or a specific behavior and you are somewhat discriminatory and thoughtful, it can be a great resource.

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About rhapsodyinautism

I'm a Mom of two little ones-- a two-year-old son newly diagnosed with autism spectrum disorder and a baby girl who is too young to make any guesses. I work a little bit from home for an environmental nonprofit, and I am a freelance journalist. I love cooking, singing, and autumn weather. And I'm married to a brilliant, involved Daddy.
My son is an auburn-haired smartypants who loves trucks and jazz. He taught himself the alphabet at 20 months. He has a beautiful social smile, but he finds eye contact aversive.
He is the reason I am writing this blog... because there is a huge lack in legislation, funding, insurance coverage, and understanding in regards to autism spectrum disorders. This will be my place to advocate, tell the tale of our journey, and hopefully share a few tears and laughs along the way. This is our family life, and we have embraced it.